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Friday, September 9, 2016

New Research Brings Hope

For years, when asked what it's like to have severe myalgic encephalomyelitis (ME or ME/CFS), particularly during a setback or post-exertional crash, I would often tell people it feels like a near total body shutdown. At its
worst, I can barely move or turn myself in
bed, and can feel the energy it takes just to breathe. It is an experience that is hard to put into words because it
is so far beyond
the normal, everyday conception of
sickness. And without knowing the details of exactly why these symptoms
occur, it makes it all the more difficult for
others (or even for those who experience it) to fully grasp and
understand it.

However, thanks to a new study out last week by
the University of California's San Diego School of Medicine, we may
finally be closer to an answer. And while their findings don't yet explain everything, they do potentially explain a lot. Indeed, it is quite remarkable when the very
words you've used to describe what this illness feels like -- a near
total body shutdown -- is revealed by science to be what may actually be happening on a cellular level.

Dr. Robert Naviaux's metabolomic study shows that cells of ME/CFS patients appear to be in what's called a
hypometabolic (or dauer) state -- analogous to a kind of protective hibernation --
in response to an infection, toxin or other threat.

Dr. Naviaux explains:

"Despite
the heterogeneity of CFS,* the diversity of factors that lead to this
condition, our findings show that the cellular metabolic response is the
same in patients. And interestingly, it’s chemically similar to the
dauer state you see in some organisms, which kicks in when environmental
stresses trigger a slow-down in metabolism to permit survival under
conditions that might otherwise cause cell death.

In the case of
CFS, when the CDR [cell danger response] gets stuck, or is unable to
overcome a danger, a second step kicks in that involves a kind of siege
metabolism that further diverts resources away from mitochondria and
sequesters or jettisons key metabolites and cofactors to make them
unavailable to an invading pathogen, or acts to sequester toxins to
limit systemic exposure. This has the effect of further consolidating
the hypometabolic state. "

Eighty percent of the diagnostic metabolites measured were
decreased in ME/CFS patients, creating a type of metabolic signature that allowed for an accurate differentiation between patients and healthy controls. In fact, Naviaux's diagnostic accuracy rate, based on these results, exceeded ninety percent.

Dr. Naviaux goes on to say:

"CFS is an objective metabolic disorder
that affects mitochondrial energy metabolism, immune function, GI
function, the microbiome, the autonomic nervous system, neuroendocrine,
and other brain functions. These 7 systems are all connected in a
network that is in constant communication. While it is true that you
cannot change one of these 7 systems without producing compensatory
changes in the others, it is the language of chemistry and metabolism
that interconnects them all."

While Naviaux's study will need to be replicated, other scientists are
already finding similar results. For example, earlier this summer, an ME/CFS study out of Australia found irregularities in energy metabolism as well as amino acid, nucleotide, nitrogen, hormone and oxidative stress metabolism. They state that "the overwhelming
body of evidence suggests an oxidative environment with the minimal
utilization of mitochondria for efficient energy production."

More recently, in a webinar held
by the Solve ME/CFS Initiative, Dr. Maureen Hanson of Cornell
University mentioned similar metabolomic findings in a study that is
currently awaiting publication.

Dr. Ron
Davis of Stanford University and the Open Medicine Foundation is conducting the first comprehensive study ever done on
severe ME/CFS patients, and has also already found similar disruptions in
metobolomic pathways in his preliminary data, which he reported on at the Invest in ME 2016 Conference. Davis has a son, Whitney,
who is severely afflicted with this disease. Whitney is completely
bedridden and must be tube-fed. He is unable to speak or tolerate any
kind of touch or interaction.

"In other diseases, the kind of disability seen in the most
severely ill ME/CFS patients is a prelude to death. Once people get THAT
sick they’re usually going to die; a process has been started that’s
going to result in death. But that generally doesn’t happen in ME/CFS.
People can remain functionally in what appears to be a near death state
for a long time. That could suggest a way has been found to keep the
body alive in a very low energy state."

Collectively, these findings could lead to a better
understanding of what may turn out to be a central mechanism involved
in this illness, and could also open the door to the first possible
diagnostic test for ME/CFS.

Most
importantly, this discovery
may lead to new avenues for potential treatment in the near future.
While it's unclear yet what that treatment may be, Naviaux appears optimistic.
He states, "...metabolomics reveals a new window into the underlying
biology of CFS that makes us very hopeful that effective treatments will
be developed soon and tested in well-controlled clinical trials."

In simple terms, for millions of patients with ME/CFS who have been awaiting answers for far too long, this new study brings much needed hope.

Thank you for using your precious energy to write this excellent post Laurel. I have been trying to find a way to summarise the recent metabolomics research for my family & close friends. Due to the severity of my cognitive symptoms I've not been able to do this yet - but now I don't have to! I will be sharing this brilliant post with many people. Your description of a crash is so perfect too.

Laurel, Thank you for sharing this link on FB. This is magnificent--clarifying, hopeful, and so well written and well researched! It is literature. Thinking of you with love (and admiration!), your friend, Maureen

Maureen -- What a lovely surprise! Thank you for taking the time to read my blog and comment. It means so much! I think of you often as well -- have many fond memories of our HS years. Much love to you. xo

Dear Laurelthank you for this great post! I researched some more and stumbled upon an article linked to the research you wrote about, quoting Dr Ian Lipkin who said 'he believes it’s possible to solve ME/CFS in three to five years' provided the funding is sufficient. He's a well know virus researcher and can apparently be taken seriously. Here's the link in case you haven't already read it:

I've been following your blog for a few years now and I wanted to thank you for your courage and persistance. Your example has helped me to stay hopeful over the years. take care and all the best for the futurelots of love from GermanyAnna

Thank you for your kind and hopeful comment, Anna. I do know of Dr. Lipkin's work and find it very promising! I'd forgotten his quote about hoping to solve ME/CFS in three to five years if the funding is sufficient. Thank you for the reminder! It does give me hope. It's unfortunate that the funding for this disease is so lacking. I so hope he is able to get the funds he needs to meet his goal. We have all been waiting so long.

Thank so much for following my blog all these years, and for your kind remarks! It is very much appreciated. Take care and all the best to you! xo